Hashimoto’s AND recurring thyroiditis? You’re not alone!

Any one else in the 5%-20% of people with Hashimoto’s who also suffer with recurring painful thyroiditis? I’ve found some studies to use as evidence.

I was diagnosed autoimmune hypothyroid 20 years ago and I’m on 100mc thyroxine. But I’ve never been well - permanent muscle/joint stiffness/aching/burning, infertility, depression and fatigue.

In addition to that, every 2-3 years I become extremely unwell for months on end with inflamed thyroid and flu-like symptoms. I now believe these are repeated episodes of thyroiditis (I’m currently in one.)

I think the first thing is to try steroids BUT I believe that for me the only thing to improve my life is a thyroidectomy.

I have an NHS Endo appointment coming up in March. Here’s my latest results:

TSH 1.69 mIU/L 0.27 -4.20

Free thyroxine (T4) 19.300. pmol/L 12.00 -22.00

Free T3 4.57 pmol/L 3.10-6.80

Thyroglobulin Antibody TGAb 65.700 IU/mL 0.00-115.00

Thyroid Peroxidase Antibodies TPOAb * 102. IU/mL 0.00 -34.00

Here’s what I found out online:

About viral or painful sub-acute thyroiditis, aka subacute granulomatous thyroiditis, aka DeQuervain’s thyroiditis:

“This is an uncommon condition. It is believed to be caused by a viral infection of the gland, usually associated with ‘flu-like’ symptoms. It is more common in women most often affecting those aged 20-50.”

What are the symptoms of viral or painful sub-acute thyroiditis?

“Persistent pain and other symptoms.

Enlarged thyroid gland with pain or tenderness that develops rapidly over 24-48 hours.

Sore throat.

Flu-like symptoms.

Tenderness in the thyroid region, tender and swollen thyroid gland. Painful enlargement of the thyroid gland.

May persist for weeks or months.”

What is the treatment for viral or sub-acute thyroiditis?

“Prednisolone for one or two months. This is a highly effective treatment..reported to cause rapid relief of pain and fever within 24-48 hours.”

What is the outcome?

“People usually recover completely in two to five months .

20% of patients needed longer than 8 weeks to recover from the inflammation. The longest duration was for 40 weeks.

Recurrences occur in around 5% - 20% of patients.

Can cause permanent hypothyroidism.”

"Rarely, some patients with recurrent and disabling episodes of thyroiditis may elect to remove their thyroid, either surgically or using radioactive iodine ablation"

See these two studies online:

Autoimmune thyroid disease accompanied by recurring episodes of painful thyroid ameliorated by thyroidectomy. J Endocrinol Invest. 2002 Dec;25(11):996-1000

Quote:

“For one female patient..Four episodes of painful and tender thyroid occurred over the next 2 years accompanied by acute inflammatory reactions..No further episodes occurred after thyroidectomy, and during a 3-yr follow-up period, TBII and thyroid-stimulating antibody (TSAb) disappeared and TGAb and TPOAb titers decreased. This case report provides further evidence.. that thyroidectomy helps patients affected by this condition that are unresponsive to other treatment strategies.”

and

Painful Hashimoto's Thyroiditis as an Indication for Thyroidectomy: Clinical Characteristics and Outcome in Seven Patients. J Clin Endocrinol Metab. 2003 Jun;88(6):2667-72.

Quote:

“In conclusion, thyroidectomy is an uncommon but necessary therapy for patients with painful HT not responding to medical therapy. Patients with chronic lymphocytic thyroiditis, or Hashimoto's thyroiditis (HT), usually present with goiter, hypothyroidism, or both. Thyroid pain and tenderness are rare and suggest an alternative diagnosis of subacute granulomatous thyroiditis or other forms of thyroiditis.”

[MaisieGray]

You have Hashimoto's Thyroiditis as evidenced by your over range TPO Ab result, and the cause of your hypothyroidism. De Quervains is something different, with a viral cause. The increase/decrease in symptoms that you experience will no doubt, be due to Hashimoto's flares.

[Hidden in reply to MaisieGray]

Thanks, to clarify, I’m comparing De Quervains symptoms with Hashimoto’s as in my experience the symptoms the same. This is as a lead up to the studies I’ve quoted - recurrent debilitating Hashimoto’s thyroiditis can be treated with steroids each time it occurs but for some, like me, a thyroidectomy is the only way. These studies show that HT should be recognised as being so debilitating it must be taken seriously and often needs surgery.

[MaisieGray in reply to Hidden]

Yes I understood that, but was asking why, as you have proven Hashimoto's thyroiditis, and poor thyroid functioning as a result, would you assume your symptoms to be evidence of a different form of Thyroiditis, especially as you say, the symptoms are the same? Given the apparent viral connection with De Q's, are you aware of experiencing any viral condition before the start of your symptoms?

[Hidden]

It was triggered by a flu virus last time that I was aware of it, worsening all my symptoms permanently. This time no idea what triggered it. So I’d say no, not necessarily viral. I’ve considered all kinds of triggers over the years but I think it basically comes down to my thyroid gland itself being extremely sensitive. Better off without it. This might not necessarily be the best time to reach conclusions as I’ve been very ill for months including Christmas and obviously it’s frustrating.

[Marz in reply to Hidden]

MaisieGray will not have seen your reply - so have tagged her

[MaisieGray in reply to Marz]

Thank you Marz

[marigold22]

I've just read your post and although it's extremely late (nearly 1am) I just had to reply to you. I've had all of your listed symptoms, discovered myself that I have Hashimoto's Thyroiditis, and have managed to recover. Please please do not have a thyroidectomy. That is so permanent. I'm living proof that after 30+ years of chronic illness, I found a way back to good health. With the help of this fantastic forum.

I did take prednisolone for a few months - on the advice of the well known private doctor Dr Peatfield. But also it took a lot of supplements and total change of diet.

[Hidden in reply to marigold22]

Was the course of prednisolone for your thyroiditis - swollen thyroid, flu type symptoms? Did it work and has it ever returned since then?

[ShootingStars]

Hi. Your symptoms are probably because your FT3 is much too low. You are not converting T4 into T3 either. Being under medicated is also evedent by your too high TSH. Your TSH is nowhere near as suppressedas it should be at 1.69. When properly medicated, TSH is very suppressed and it should be down under 0.50 and/or your FT3 should be optimal. You are at neither.

If you add T3, your symptoms will decrease. Your FT3 will become optimal and your TSH will be suppressed.

How often are your antibodies tested and what were your previous results? You could also have a hidden infection. Any sinus issues? Have you ever had an MRI of your head which show your sinuses? You can have a hidden sinus problem and not even know you have an infection. I did and that was what helped fuel my Hashimoto’s. I had reoccurring flu like symptoms but no obvious sinus infection symptoms aside from head aches. It was found on MRI. Once treated with antibiotics the symptoms went away and my antibodies went down.

[Hidden in reply to ShootingStars]

Thanks -

My antibodies have never been tested before in 20 years. I heard about them here just recently for the first time and ordered Medicheck tests.

I had a recent TSH of 0.5 but I had just taken my levo tab so I’m discounting it. All my previous blood results are in this recent post healthunlocked.com/thyroidu...

Since then I’ve started taking 125-150 mc thyroxine daily. I’m planning to order repeat Medicheck tests in February.

I’ve never had an MRI. I do have some sinus issues, permanent earache a sore throat. I can ask for antibiotics and may be given them in case it helps.

I have an endo appointment end of March.

[ShootingStars in reply to Hidden]

Hi. You're welcome. I read your labs. You have Hashimoto's. You are right that taking your levo right before your bloods will mess up the results. What about all of your previous results? How soon before those labs did you take your medication?

Your lab work is too few and far between to manage this disease well, I hate to say. Labs should be done every 6 weeks and meds adjusted every 6 weeks until you have little to no symptoms. FT3 and FT4 need to be tested at the same time as TSH every time.

Like I thought, you are not converting T4 into T3 properly. Your FT3 is really much, much lower in reality than your labs that were taken on Nov 27, but that we can't use because you'd just taken meds. At that time, your FT3 was only 40% of range, not the upper 1/3 of range. Even your tests from 2008 and 2007 showed that you had low FT3 and you were only 43% of range back then.

On Nov 27, your FT4 was 73% of range. It was a little higher at your previous testing from 2015 and at times it was too high. Too high is just as bad as too low.

Going from 100 mcg Levo to 125-150 mcg Levo is not going to fix your conversion problem. Your FT4 will rise even higher, which will make you feel worse, and your FT3 will still be lagging behind, which will also make you feel worse than if both FT3 and FT4 were at optimal range. The way to fix conversion problems is not to take more Levo, but is to add some liothyronine (T3) to the mix.

People with Hashimoto's usually have nodules on their thyroid and this always needs to be looked at with an ultrasound to look for nodules, determine the type and to make sure that you don't have thyroid cancer.

If you have a permanent ear ache and permanent sore throat, and you have sinus issues, you have something serious and long term going on. This is not normal and is not something you should allow to fester. Any type of infection will cause an immune system reaction. If left untreated, this can increase your thyroid antibodies. This could even be the cause of why your antibodies are positive. They are not super high, but they are positive, so this means that you have Hashimoto's. You need to see an Ear Nose and Throat doctor, an ENT, for your permanent ear ache, permanent sore throat, and for your sinus issues. Sounds like you have some ongoing infection brewing. You don't want to permanently damage your hearing, go deaf, or have something else go wrong here.

Your permanent ear ache and permanent sore throat could also be caused by your thyroid disease.

[Hidden in reply to ShootingStars]

Thanks for taking time to give all this feedback, very kind. I’m going to take some time to process it.

[Saya85]

Hi

Just to add to all of the above have you had your vitamin levels checked ? Especially vit D

It's vital in supporting immune system and for viral control too.

There is a strong link between low vit D and hypothyroidism and high antibodies. In particular glandular fever (EBV/mono) cells often hide way in the thyroid ..... Vit D is crucial to combat these cells and infections

It might not be De Q's but just recurrent glandular fever which is awfully debilitating ! In which case sorting your vitamin levels.may just help fight the recurrent infections if viral as well as improve your t4 to T3 conversion

Vit D iron folate ferritin for and b12 are all vital for good conversion

Of t4 to T3

They also help with red blood cell formation and O2 transport so can help with breathing problems also (have a look at symptoms of deficienies in these and you may be surprized)

(Do take magensium.and vit K2 Mk7 co factors with your vit D for symptoms relief- especially with your fibromyalgia - and to direct calcium to your bones not bloods). You can use a skin spray version or bath salts for immediate muscle and nerve relief or you can take tablets.

I had 2-3 viral infections one after the other (for years no problems previous!)

My vit D, b12 and ferritin were all floored - as soon as they were treated I felt hundred times better and no further infection

Once your vitamin are optimised if you're t4 to T3 conversion is still poor then you will.need T3 added to your levo to top it up.

But eliminate the obvious ones first

P.s. high vit C is usually required by us hypos and will help with the fibro symptoms too.

Also chia seeds and omega 3s will really help with joints and anti inflammation.